Nearly 2 years post op for endometrial cancer

Hi Rosetta20 and welcome across to this corner of the community.

First well done getting through your treatment and getting to this point.......  but I do understand the challenges of being put on self directed aftercare.

I was diagnosed way back in 1999 with a rare, incurable but treatable type of blood cancer....... I had over 16 years of treatment and only ever was in 6 - 9 months remission before treatments had to start again. I eventually reached stage 4a in mid 2013 and had two years of full on treatment...... but as far as I'am concerned I won the lottery back in Sep 2016 when I was told i was in remission - the first long term remission in 17 years...... and I still am.

In June 2018 I was discharged from all care and follow up by my consultants - But I do get full bloods and obbs done once a year at my GP surgery but as I am 66 I think this is more an age thing as well as some other existing none cancer health conditions.

When I was discharged the consultant said "Mike you have been on this journey far to long, it's time for you to live and not be looking over your shoulder every time a clinic appointment comes in - go and enjoy your hard fought for life - you know where to find us if you need us but our hope is we wont see you again"

If it was not for coming on to this community and helping out I would not be thinking about my cancer...... remember it is incurable and could well come back in the future....... but I refuse point blank to allow this thought (fear) to define me and my families life.

There is always a chance of a reoccurrence, I am very high up the 'at risk' list for skin cancer due to the years of treatment I have had....... and what else 'may' come along?....... but I am not going to waste my life and put both my body and mind through the torture of continually thinking about the 'what if's?'

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

We are all given an invisible rusk-sack when we get diagnosed with our cancer. We then proceed to keep loading 'stuff' into it over our cancer journey....... emotions, fears....... and after a period of time the weight of the ruck-sack starts to pull us down...... you need to unpack this rusk-sack from time to time.

The paper will help you think through the 'unpacking' process but 'talking' with others can help also so do check to see if any Local Macmillan Support in your area that has opened back up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and their 'Where now?' course is excellent.

Always around to chat.

Hi Mike,  Thank you so much for taking the time to reply. Gosh you've been through the mill and back. I feel like my worries are nothing after reading a lot of posts on here. I will check out the paper you mentioned. I hope you are kepping in positive spirits,and wish you all the very best. 

Thank you for sharing your journey Mike it has helped me to try and out my own experience in perspective. I had a three month check up today and the doctor is sending me for a scan. I have been immediately plunged into despair but reading such a positive story from you has been so good. Thank you 

Hi ShanLan and welcome across to this little supportive corner of the community.

Oh 3 monthly checkups...... I was having these for over 17 years as I was always on some tryp of treatment but I have to say that I developed a teflon coating after a few years - 'what will be will be' and whatever comes along I would deal with it and I am still around talking with you - result.

I also developed the mindset that said "until I am actually told their is a problem then there is not"...... it sound simple but the best things in life is oten simple ;)

You may find this article helpful.... do come back with your thoughts about it as I am always around to chat ((hugs))

What Is Scanxiety and How Can You Manage It?……. Choose Hope

The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.

Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.

Acknowledge your Feelings

Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.

Talk about It to the Right People

Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.

Practice Mindful Living

Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.

Distract Yourself

Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you laugh. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.

Ask Questions

Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything – from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean - don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.

Plan for the Worst Outcome…

Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help  you regain your power as well as your optimism.

…but Visualise the Best

Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.

Thank you so much again - lots of food for thought. I would really like to talk to my Macmillan nurse or someone else in the know but haven’t yet been able to make contact - I will keep trying though. Thank you again